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Mom desperate for a drug she says could save her son’s life

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TUMWATER, Wash. — A rare disease is eating away at an 8-year-old Tumwater boy. His mother believes there is a cure for her son’s neurological disease, but her son isn’t allowed to take the drug undergoing clinical trial.

kidBrandy O’ Connell said Thursday her son has a mitochondrial disorder called Leigh’s disease. It is so rare it only affects about 1,000 kids in the United States.

O’Connell said there is a drug called EPI-743 that she believes could save her little boy, Logan Butterton, but Logan cannot get access because the drug is not FDA-approved yet.

Logan loves playing in the park but now he spends more time in his wheelchair watching other kids.

“He could do what other kids can do, and it got taken away from him,” said O’Connell.

The mom says her son’s speech and muscles started deteriorating about two years ago. Then in April of this year his condition took a turn for the worse.

“It starts to shut your body down and the respiratory system is last,” said O’Connell.

She’s terrified her son could stop breathing any day now.

“Because the future is unpredictable, I don’t know if we have months,” said O’Connell.

She said EPI-743 is her only hope.

It’s not FDA-approved but it is provided in clinical trials.

“There aren’t any serious side-effects it has actually stopped or reversed the disease,” said O’Connell.

The mom says she is positive that her son has Leigh’s disease but admits it is hard to test for mitochondrial disease.

She says her son tested positive for one of the genetic mutations but she is still waiting for final test results confirming he has the second mutation. Final test results are required to participate in any clinical trial.

“It’s something that could save my son; it’s right there, it’s just out of reach,” O’Connell said.

She added that she has begged doctors at Mary Bridge Hospital in Tacoma and Seattle Children’s, only to hear there is no way to get around FDA rules.

“I know we are not the only ones who are going through this out there,” said O’Connell.

Logan’s family and friends created a petition lobbying lawmakers to make an exception for parents, allowing them to have the choice.

“I’m willing to waive liability for the chance that he is OK or better — even just stopping the progression where it is at,” said O’Connell.

Edison Pharmaceutical, maker of the drug, says they are doing clinical trials all over the world. They hope the trials are successful so they can eventually get that FDA approval. O’Connell says time is not on Logan’s side. This is the link to Logan’s petition.

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